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SPECIAL ARTICLE: David B. Allen, Michael Kappy, Douglas Diekema, and Norman Fost Growth-Attenuation Therapy: Principles for Practice Pediatrics 2009; 123: 1556-1561 [Abstract] [Full text] [PDF]

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Too Early for Routine Growth Attenuation

Garey Noritz   (14 June 2009)

Growth attenuation will not solve the problem

Miriam A. Kalichman, MD   (18 June 2009)

limited growth without attenuation

Michelle Kuperminc   (24 July 2009)

Too Early for Routine Growth Attenuation 14 June 2009
Garey Noritz, Physician MetroHealth Medical Center, Case Western Reserve University School of Medicine Send letter to journal: Re: Too Early for Routine Growth Attenuation gnoritz{at}metrohealth.org Garey Noritz	To the editor- Growth attenuation with high dose estrogen is a new and radical therapy for children with profound neurologic impairments as described in a recent Pediatrics article . Proponents of this therapy cite the benefit of a smaller body habitus for children requiring significant care as justification for limiting their growth potential. The authors state that this therapy is a safe and an effective intervention to ease the burden of care for these children and their families. Neither assertion has yet been proven. The authors suggest that growth attenuation therapy should be discussed with the parents of all severely affected children beginning at age three years, and that growth attenuation should be discussed in equipoise with growth promoting therapy. I believe that this is a therapy that should be reserved for only the most extraordinary circumstances, and ought not to be considered an “optional intervention” at this time. The age of three is too early for such a discussion for both physical and psychological factors. The extent of disability can usually, but not always, be predicted at this age. Children may make significant and unexpected cognitive and motor improvements in early childhood. Severe motor disability may also interfere with assessment and underestimation of a child’s cognitive ability, meaning that growth attenuation could be wrongly prescribed to a cognitively intact patient. The authors equate estrogen used for this purpose as just another off label use of an adult medication in pediatric medicine. This is a false comparison because the indications are so different. When a child is prescribed estrogen for hypogonadism, it is an extension of its intended purpose without regard to the patient’s age. There is no equivalent for growth attenuation therapy within adult medicine. The literature on growth attenuation therapy for this indication is scant , while our experience with growth promotion therapy (nutritional supplementation) is vast. The volume of literature alone does not mean that one is superior, but it should give us pause before we regard the opposite as a viable alternative. As the authors note, nothing is known about long- term effects of treating young children with high doses of estrogen, while the provision of proper nutrition to children has been the standard of care for years and is seen as a moral imperative. In the past, cardiac or intestinal surgery for babies with Down Syndrome and routine sterilization of females with mental deficiency were also new and radical therapies. I specifically cite these two examples because time and experience have shown the former to become the standard of care and the latter an abomination. It is too early to tell into which category growth attenuation therapy will fall. Garey Noritz, MD Pediatrics and Internal Medicine MetroHealth Medical Center Case Western Reserve University School of Medicine Cleveland, Ohio Conflict of Interest: None declared
Growth attenuation will not solve the problem 18 June 2009
Miriam A. Kalichman, MD, Physician Assoc. Medical Director, Division of Specialized Care for Children University of Illinois Chicago Send letter to journal: Re: Growth attenuation will not solve the problem mkalich{at}uic.edu Miriam A. Kalichman, MD	I offer another perspective on attenuating the growth of children with severe disabilities. As a neurodevelopmental disabilities pediatrician my experience is different. Many families, including those whose children are too large to lift, are upset to learn that most non- ambulatory people will be much smaller than their parents, often expressing sorrow that the child will be a “dwarf”. But there is no size at which a person can always be cared for by aging parents. Even a person of 25 lb and 36 in is a challenge for daily repetitive lifting for a 70 year old. Home care invariably becomes more difficult for aging parents and often more socially restrictive than group care for the disabled adult. This treatment involves interference with normal physiology in contrast to the example of club foot repair which normalizes anatomy. I am unaware of another treatment whose intent is prevention of normal physiology except sterilization. Importantly, physicians and parents working together have made disastrous treatment decisions about people with developmental disabilities or perceived disabilities because of prejudice and lack of vision regarding future resources. We remember with shame lobotomies, non-treatment of children with myelomeningocele because of parental social status or an expectation of wheelchair use, and non- treatment of heart disease in children with Down syndrome. The description of profound cognitive disability offered by Allen et al is far too broad for clinical use. The idea that we can be certain about prognosis for “nuanced” communication in a 3 year old is simply wrong; too much depends on how the child is raised and cared for and at 3 years many parents are still too confused and sad to grapple with the future, regardless of how certain the prognosis. What about large ambulatory disabled children who elope and are aggressive? Growth attenuation might make it possible for their parents to care for them at 10 years of age, let alone adulthood. It is more difficult to get care for ambulatory autistic people who are aggressive than it is for non ambulatory people who are fully dependent. Why not “help” them out too? Conflict of Interest: None declared
limited growth without attenuation 24 July 2009
Michelle Kuperminc, MD University of Virginia Send letter to journal: Re: limited growth without attenuation mk4sg{at}virginia.edu Michelle Kuperminc	July 23, 2009 Caring for a child with severe motor and cognitive disabilities in the home is a challenge which may become more difficult as a child grows to adult size. Although there is very little evidence that child length or weight actually impacts parent or child quality of life, there is a great deal of evidence supporting the theory that children with severe motor disabilities do not grow well. Therefore, additional information should be considered in advising parents about a severely disabled child’s growth potential. There is ample evidence that children with severe disabilities, such as cerebral palsy, are smaller than their typically developing peers for a variety of reasons1,2 . More recent studies suggest that such children diverge from their normal peers with age and do not achieve their genetic growth potential. In fact, it may be possible to predict expected weight and height based on functional severity of cerebral palsy as can be seen on the growth charts available for people with cerebral palsy in California (www.lifeexpectancy.com/articles/growthcharts) and through our research at the University of Virginia with the North American Growth in Cerebral Palsy Project.3,4 Thus, if one is to consider such treatment, one should consider it in light of best evidence of likely adult stature and not with the expectation that the child would achieve her genetic growth potential. Informed consent requires that parents be aware that, even without growth attenuating therapy, their children may not grow to an unmanageable size. Given that the magnitude of effect of early estrogen treatment on adult stature is unknown, this point is particularly relevant. This may or may not alter decision-making, but it certainly better informs parents fearful of an uncertain future for their child. Furthermore, it is premature to propose that growth attenuation be included as a part of “anticipatory guidance”. Randomized controlled clinical trials of growth attenuation may be an appropriate next step, but there is inadequate evidence to support this intervention as a standard practice. Sincerely, Michelle N. Kuperminc, MD Assistant Professor of Pediatrics University of Virginia 1. Krick J, Murphy-Miller P, Zeger S, Wright E. Pattern of growth in children with cerebral palsy. J Am Diet Assoc. 1996;96(7):680-685. 2. Stallings VA, Cronk CE, Zemel BS, Charney EB. Body composition in children with spastic quadriplegic cerebral palsy. Journal of Pediatrics. 1995;126:833-839. 3. Stevenson RD, Conaway M, Chumlea WC, et al. Growth and health in children with moderate-to-severe cerebral palsy. Pediatrics. 2006;118(3):1010-1018. 4. Day SM, Strauss DJ, Vachon PJ, Rosenbloom L, Shavelle RM, Wu YW. Growth patterns in a population of children and adolescents with cerebral palsy. Developmental Medicine & Child Neurology. 2007;49(3):167-171. Conflict of Interest: None declared